Dear Susan, Thanks for the tip! My wife is a connoisseur of such baths, as am I. Yes, we all came into this world for better or for worse, and we learn to ride the ups and downs. Wishing you strength and peace... David
Date: Fri, 3 Apr 2015 20:56:41 -0400 From: [email protected] To: [email protected] Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML Dear David, Dealing with two issues has happened to several of us, but usually not two types of leukemia! You are very special to decide to keep fighting on this. What choice do we really have? It's a win-win, if we leave this earth we go to a better place forever, or if we stay here longer we get to enjoy our loved ones. Sounds like your wife is pretty special and needs a little care for herself, too. Tell her I suggest a nice soak in the tub in epsom salts and lavender oil. It's a great pampering device, and soothes the nerves. May your holiday be pleasant as you derive your strength from Him. We are in this together, you are not alone. Blessings and 18's, Susan F. Zimmerman -----Original Message----- From: David Bradley <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Apr 3, 2015 8:09 pm Subject: RE: [CMLHope] Dual Diagnosis: CLL/ CML Dear Joyce, Actually, God and I are in this for the duration and I (fortunately) don't see that there are many alternatives to that. I only wish that when my appetite goes bad, and I am feeling detached from the things that once might have led me astray, that it would automatically create lots of face-time with God. Instead I am checking my edema, taking my blood pressure, setting up reminders to take my pills, worrying about my wife (a super care-taker who also looks after an 88-year-old Mom), etc. Still, whenever I ask for God's company, I usually get some sense of presence. It's not necessarily to fix the problems: more to reset my compass. I have been very lucky with the care I've received, and I'm good for now. I'm glad your husband has Dr. Talpaz (and you). I have learned to have a lot of gratitude for these dedicated health care people (and my wife!). All the best to you and your husband, David From: [email protected] Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML Date: Fri, 3 Apr 2015 12:37:14 -0500 To: [email protected] David, The Bible tells us that God will not give us more than we can handle, but I think you are coming close. So sorry you have to deal with two blood problems at the same time. I see you live in Northern Michigan. Have you considered seeing Dr Talpaz in Ann Arbor at the University of Michigan Cancer Center? My husband comes all the way from Southern Illinois to see him. He is very knowledgable in CML and I am sure he treats other leukemia types as well. He was instrumental in the formation of Gleevec and Sprycel and several other TKIs. We recommend him highly. But I am sure you are getting good care at Mayo. Please stay in touch and let us know how you are progressing. You are in my prayers. God bless and keep you. Joyce in IL On Apr 3, 2015, at 9:12 AM, גיורא wrote: Dear David You are a special brave person and i wish you all the best and great success on your dual fight. You are the only person i have heard of that is on both Ibrutinib and Imatinib at the same time My best regards Giora נשלח מה-iPhone שלי ב-3 באפר׳ 2015, בשעה 16:51, David Bradley < [email protected]> כתב/ה: Thanks Beth! Time for another update. Based on my PCR that was negative for CML in December, and my looming CLL, I was taken off Gleevec, and started Imbruvica for my CLL, with the hope that the CML would remain dormant. There have been two slip-ups since then. The Imbruvica triggered a heart problem, an atrial fibrillation in February. At the end of a week in hos[pital, I was given one of those treatments with the electric paddles and fortunately immediately went back into a good rhythm. Arriving home, I started a recovery process in which I am still weaker than I was, but a bit better every day. Then it was time for a new PCR. My old nemesis, the Philadelphia chromosome, was back (that was quick!). So now I am back on Gleevec. My Imbruvica has to be on a 1/3 basis, since both drugs are Bruton's Tyrosine Kinase inhibitors, and both use the CYP3A4 pathway. It has only been since December that I was off Gleevec, but my heartburn reminds me of the main downside I had from it. Still, I have faith it can keep the CML at bay. Anyway, as I said, I'm better every day, and besides, spring has finally come to northern Michigan. David On Wednesday, December 17, 2014 at 12:35:08 PM UTC-5, Beth wrote: Good luck to you David. It sounds so hard..glad you reconnected here....after being diagnosed and doing well for 12 years....hope the meds support you well with the CLL. happiest of holidays to you and yours. Beth. -----Original Message----- From: Richard H < [email protected]> To: cmlhope < [email protected]> Cc: icandoallttc < [email protected]> Sent: Sun, Dec 14, 2014 12:33 am Subject: Re: [CMLHope] Dual Diagnosis: CLL/ CML I could not meet the requirements. I have too many other health issues that would interfere with the results they were looking for. When I was first diagnosed they ruled me out of a BMT for the same reasons. Richard H. On Saturday, December 13, 2014 2:07:12 PM UTC-6, Icandoallttc wrote: Hi David So good to hear from you. Marty sent us a site not long ago about a study for going off Gleevec. There are certain things you must meet to be in the study. Glad you are negative. Blessings Jeanie Sent from my iPhone On Dec 13, 2014, at 12:00 PM, [email protected] wrote: Hi, Hello everyone. I have posted here long ago, when I was first diagnosed with CML, in 2003. At the time, I started on Gleevec, and immediately had a Complete Remission, via FISH. Unfortunately, I also showed signs of CLL, which was confirmed. The CLL has been on "watchful waiting" until now. Recently my counts got very negative, due to the CLL, and I went to Mayo and found I have a 17p deletion, which is quite negative. For the CLL, I will go on Ibrutinib, a targeted therapy. Since Ibrutinib is a tyrosine kinase inhibitor, I will need to stop Gleevec, at least for a while. I kind of wish my onc had been doing PCR's for a while, but at Mayo they did one and found my CML was undetectable. Can anyone point me to any studies about stopping Gleevec after long periods (in my case around 10 years) of Complete (or molecular) remission? The current plan is to check with regular PCR's for a reemergence of the BCR-ABL. Best wishes to all... David -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------ ------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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